It’s a curious thing – because in other areas of NHS healthcare – e.g. going to see your GP, being admitted to hospital or accessing other kinds of NHS services, the chances are you’ll never hear the words ‘primary health need’.

Why? Because it’s an expression that was included in the first main NHS Continuing Healthcare funding assessment guidelines in 2007 (the National Framework for NHS Continuing Healthcare and NHS funded Nursing Care).

It’s an expression that was created to describe eligibility for NHS Continuing Healthcare funding.

A ‘primary health need’ is a concept, not a legal definition of care or care funding.

Page 51 of the National Framework states:

“‘Primary health need’ is a concept developed by the Secretary of State to assist in deciding when the NHS is responsible for meeting an individual’s assessed health and social care needs…”

and:

“The term ‘primary health need’ does not appear, nor is defined, in primary legislation, although it is referred to in the Standing Rules…”

So the first point to make here is not to get confused by the terminology. The concept is actually very simple – as we explain here…

Let’s look in more detail at what a ‘primary health need’ actually is

…plus what it means and how it affects you when being assessed for NHS Continuing Healthcare.

The National Framework guidelines were drafted in response to the Coughlan case, a landmark case in NHS Continuing Healthcare law:

In simple terms, there is a dividing ‘line’ between care that the NHS must pay for and care that is the responsibility of a local authority.

When a person’s care is the responsibility of the NHS, that care is free of charge.

When it is the responsibility of a local authority, the person may be means tested.

A ‘primary health need’ is simply a way of describing that a person’s care is on the NHS side of that line.

Essentially Pamela Coughlan challenged a decision that her needs were on the local authority side of that line, and successfully argued in the Court of Appeal that the NHS should fund all of her care.

The description of a ‘primary health need’ in the National Framework comes from the Coughlan case:

In a nutshell, a person has a ‘primary health need’ when the nature of their care is beyond that which a local authority can legally provide. Just like in Pamela Coughlan’s case: her care needs were the responsibility of the NHS to fund.

So a local authority cannot take responsibility for care that is on the NHS side of the line. If it does, the local authority will be in an illegal position.

But how do you know which side of that line your care needs fall?

Essentially, by going through the NHS Continuing Healthcare assessment process.

Questions have been raised, however, about the legality of the assessment ‘tools’ and eligibility criteria in Continuing Healthcare guidelines; if Pamela Coughlan were assessed against them, there is some debate about whether she would actually have been found eligible.

Keep in mind always, though, that any assessment for NHS Continuing Healthcare must be Coughlan compliant. In other words, it must comply with the judgement in the Coughlan case – and take account of that dividing line we mentioned earlier.

The National Framework itself on page 125 confirms that Pamela Coughlan’s needs were of a level that meant she did indeed have a ‘primary health need’:

“In respect of Ms Coughlan, her needs were clearly of a scale beyond the scope of local authority.”

How does a ‘primary health need’ relate to the Fast Track process?

A person whose condition is rapidly deteriorating and who may be at end of life should be Fast Tracked through the NHS Continuing Healthcare assessment process. Once they’ve been Fast Tracked, they should automatically be deemed to have a ‘primary health need’, as outlined on page 17 of the National Framework:

“The Fast Track Pathway Tool is used when the individual has a rapidly deteriorating condition and the condition may be entering a terminal phase. For the purposes of Fast Track eligibility this constitutes a primary health need. No other test is required.”

In summary, saying that someone has a ‘primary health need’ is the same as saying they are on the NHS side of the funding dividing line – and therefore eligible for full NHS Continuing Healthcare funding.

12 Comments

My mother was discharge from hospital with end stage life illnesses, mid 2017. Heart failure, heart only working at 20%, 3rd stage kidney failure and most recently diagnosed with severe sleep apnoea now having to wear a mask every night to assist her breathing. She is bed ridden and totally dependent on the care provided. Continuing Healthcare (CHC) are now chasing a review, but have failed to provide me with medical records and questions that they are to refer to in the meeting. All the bodies who are to assess mum have been evasive to say the least with why they need to assess my mother. Whilst it’s great my mother is still with us, the pressure of CHC threatening to take away funding is now making her more agitated and stressed than she has ever been. Can anyone advise me on the conditions above and are they classed as primary health care needs?

My relative was placed ina nursing home from hospital six years ago and thereafter was deemed to be self-funding . We suspect that a Checklist for consideration for a full assessment for nhs continuing care funding was never undertaken and since admission to the nursing home immediately was subject to self-funding which has continued to this date. Does anyone know what the legal position on this is and where can I locate the specific legislation and regulations etc that will address this particular process. My understanding is that the Local Authority should have engaged the process of looking at entitlement to possible NHS Continuing Healthcare Funding before setting up and means testing of her finances and thereafter billing her for her residential care. It appears to me that in the absence of following this process the Local Authority has acted illegally.

My husband was fast tracked with NHS Continuing Healthcare (CHC) as he has a brain tumour and on end of life. We were due an assessment from CHC after three months in a nursing home. There was a mixup so a new assessment is due on 26th February.
Any tips for us when we have the meeting or anything we should be aware of that will be beneficial to our case. My husband needs 24 hour caring.

Kate, remember that it is needs in close detail that you should concentrate upon. Then examine any input from carers that seems similar to what might be given in a hospital…. Remember, nursing care is limited as far as councils and self funders to what a council could lawfully provide. Registered nursing is not possible at all if the council accepts responsibility. So examine any registered nursing given to date within the home, in close details as to frequency intensity, complexity

My father was also fast tracked in early December for palliative care and is about to go through his three month review. He is bed ridden with a severe heart condition.

We have heard nothing yet however from the CCG despite the three months being up in less than two weeks. After having ups and down he seems to be improving but has intermittent chestiness and urinary infections. The nurses at his nursing home feel confident his NHS Continuing Healthcare (CHC) funding will be confirmed but we are a little nervous of what to expect.

The National Framework ‘s statement: “The term ‘primary health need’ does not appear, nor is defined, in primary legislation, although it is referred to in the Standing Rules…” is disingenuous to the point of being misleading.
It is true that the Standing Rules aren’t primary legislation. So what? They are secondary legislation and still form part of the law of the land, and trump departmental guidance like the National Framework (NF). And ‘primary health need’ is more than just ‘referred to’ in the Standing Rules as the NF claims.
Section 21 (7) imposes two imperatives and permits no wiggle room. To paraphrase:
Assessors “must” consider whether the healthcare need is more than just incidental to the provision of accommodation or is beyond the normal scope of social services. If either alternative applies, then a primary health need “must” exist.
Once they have weighed the evidence as required by the NF, the assessors must run this test in order to reach their conclusion, or the decision will be unlawful.
As a matter of law the Standing Rules specify when a primary health need exists. A working definition would be: “A primary health need is a healthcare need which is more than just incidental to the provision of accommodation or which is beyond the normal scope of social services.”

My mum passed away in April 2016. When her health began to deteriorate we requested an NHS Continuing Healthcare assessment. When the local CCG contacted me to make an appointment for assessment I explained that my mum was at that point end of life and I was told if mum passed away they would carry out a retrospective assessment. It is now almost two years later and the assessment still hasn’t been done. The member of staff at the CCG who made the appointment with me denied making it but fortunately there was written evidence in the form of a diary entry confirming the appointment. To say it is frustrating is an understatement because it seems that the CCG’s are untouchable. I have complained to PALS and also the Parliamentary & Health Service Ombudsman but it seems there is very little they can do.

Tracy, if end of life was obvious then Fast Track was the course to take and not some nonsense about retrospective assessments. Gather medical evidence if medics recorded anything. Or use care notes and if the same care staff and nurses are still around, it might be worth working out relevant questions and getting them to write their answers. Fast Track is an uncontestable right…. If rapid decline is apparent.

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